Protocol for a population-based ankylosing spondylitis (PAS) cohort in Wales

Area of Science:

• Rheumatology
• Health Informatics
• Epidemiology

Background:

• Ankylosing spondylitis (AS) is a chronic inflammatory disease requiring comprehensive data for effective management.
• Existing data sources are often fragmented, hindering a holistic understanding of AS.
• Population-based cohorts are crucial for studying chronic conditions like AS.

Purpose of the Study:

• To establish a comprehensive, population-based cohort of individuals with ankylosing spondylitis (AS) in Wales.
• To integrate diverse data sources, including clinical, patient-reported, and routine health data.
• To investigate the disease history and health economic impact of AS.

Main Methods:

• Utilizing a data linkage system to combine secondary care clinical datasets (rheumatologist notes).
• Incorporating patient-derived questionnaire data on disease activity, function, and quality of life.
• Linking with routinely collected data from GP records, hospital admissions, and laboratory results.

Main Results:

• The developed data model successfully integrates patient-supplied, primary, and secondary care data.
• This unified model enables the study of AS disease history and economic costs.
• The methodology facilitates research into severe disease factors and medication adverse events.

Conclusions:

• The integrated cohort provides a robust platform for understanding ankylosing spondylitis.
• This approach offers significant benefits for patients, clinicians, and healthcare managers.
• This pilot project demonstrates the potential of linked data cohorts for other chronic diseases.